IASCFS/ME - Science and the Hold on XMRV Studies

One of the big reasons DHHS wants to delay the paper is the finding of other MuLVs in their study subjects! This is explosive stuff in addition to XMRV proper.

Click to expand...

Where have they said that?

also that makes me think of....

http://www.ncbi.nlm.nih.gov/pubmed/20378372
Retroviruses are classified as exogenous or endogenous according to their mode of transmission. Generally, endogenous retroviruses (ERVs) are not pathogenic in their original hosts; however, some ERVs induce diseases. In humans, a novel gammaretrovirus was discovered in patients with prostate cancer or chronic fatigue syndrome. This virus was closely related to xenotropic murine leukemia virus (X-MLV) and designated as xenotropic murine leukemia virus-related virus (XMRV). The origin and transmission route of XMRV are still unknown at present; however, XMRV may be derived from ERVs of rodents because X-MLVs are ERVs of inbred and wild mice. Many live attenuated vaccines for animals are manufactured by using cell lines from animals, which are known to produce infectious ERVs; however, the risks of infection by ERVs from xenospecies through vaccination have been ignored. This brief review gives an overview of ERVs in cats, the potential risks of ERV infection by vaccination, the biological characteristics of RD-114 virus (a feline ERV), which possibly contaminates vaccines for companion animals, and the methods for detection of infectious RD-114 virus. 2010 The International Association for Biologicals. Published by Elsevier Ltd. All rights reserved.

The issue is not their size, but how they are using what is available to them.

The letter writing campaign makes sense. Their inability to acnkowledge this still floors me. They should have at least been on board to generate more media attention and get more people involved in their organization. They failed to capitalize on a critical moment in this research. Other organizations that have capitalized on it will be better off with patients donating.

For the record, nobody ever really addressed my issues with funding:

If a patient wants to give money that they know will be spent on XMRV and they (the CAA) have not funded any xmrv studies, and the pharm study wasn't actually funded by them... then if i donate my money to the CAA , my money is still technically not going directly into XMRV research... at best an portion of it is indirectly going to these studies... i can't find any evidence that they have directly sponsored or donated their money to XMRV specific, or Retroviral research...

(as an aside, the WPI specifically hired retro virologists because they the intention of looking for those types of pathogens)

They are losing donations to organizations providing more direct routes to the types of research people want to see now.

There was nothing inflammatory about the letter writitng campaign.

The CAA's defense at this point is becoming reactionary. They have made mistakes and keep trying to shift the blame around.

Additionally, relying on accomplishments that the CAA has made years ago really doesn't change how they are continuing to deal with this now.

Click to expand...

Hi Judderwocky,

I have several issues with the CAA and even more with the WPI but I have recently donated to both the CAA and the WPI. Personally, I feel the CAA's research program is essential and complimentary to the XMRV work being done at a number of institutions.

I do know from heading up a much smaller advocacy organization that with limited funds, my group was stretched very thin and often we were unable to respond to key issues as quickly or as thoroughly as situations warranted. We had to pick our battles and the CAA has said that right now their primary focus is on finding a biomarker.

From the outside, it appears that the CAA is spread far too thin. They also appear to be struggling with their mission outside of the focus on biomarkers. And they get to chose how to alocate their time/resources. That said, to me they are the best bet for those of us not wiling to put all of our eggs in one XMRV basket. And if XMRV works out, the work the CAA is doing now will be of great use in understanding what XMRV has been doing to CFS patients.

To be frank, I wish that there were three or four orgs like the CAA so that the various tasks (lobbying/fundraising, advocacy, patient, physician, public education, research, etc.) could all be given the attention they deserve (and no matter how much attention any one group is giving these topics, I hope we can all agree that the resources going into CFS right now are pathetically small).

The sarcastic attacks shut down communication and suck energy away from efforts that I value and I am always going to respond by asking the person doing the attacking (as opposed to engaging) to put up by creating something more effective.

If I was the CAA I'd feel inclined to create a sight like TakeOurJobs.com where the United farm workers have created a sign-up form where unemployed American citizens (especially those angry about immigration issues) can apply for jobs as farm laborers. After a month THREE people (out of all the presently unemployed) had signed up.

Originally Posted by CBS I've heard enough to not have the same worries regarding a plot to "fudge" the data or that the FDA study will be suppressed. The editor in chief of PNAS (Schekman) has said that he expected it to be a matter of weeks. Does that mean that the CDC has acted fairly or in good faith. Not in my opinion. The CDC's request to hold the paper just long enough to place further requirements on the NIH/FDA group was bush league but also consistent with their previous actions. As Dr. Bateman said in the XMRV webinar, it was her opinion that the delay was actually making the to be published paper less vulnerable to criticism. That said, in my opinion the hold was completely out of line but it appeared to be just what the CDC wanted.

I just think that if they channeled like 5% of their budget into some really visible "XMRV funding RESEARCH DONATION" button on their homepage... they cold probably outpace the 5% loss of their revenue to the research with the additional donations from people looking to give specifically to XMRV research... maybe i'm way off but at least give it a shot..

The organization is delivering a product... people want to "buY" xmrv research and they need to market themselves as a product that sells that. Otherwise they just become a niche CFS research organiztion, and they need to appear as broad as possible to get as many donors as possible

all i'm saying is capitalize on it... even if you can't really bank roll it... at least make it look like you can.... nobody would even really look that closely at the numbers if it even looked like they were diverting a small fraction of their funds there.

I have several issues with the CAA and even more with the WPI but I have recently donated to both the CAA and the WPI. Personally, I feel the CAA's research program is essential and complimentary to the XMRV work being done at a number of institutions.

I do know from heading up a much smaller advocacy organization that with limited funds, my group was stretched very thin and often we were unable to respond to key issues as quickly or as thoroughly as situations warranted. We had to pick our battles and the CAA has said that right now their primary focus is on finding a biomarker.

From the outside, it appears that the CAA is spread far too thin. They also appear to be struggling with their mission outside of the focus on biomarkers. And they get to chose how to alocate their time/resources. That said, to me they are the best bet for those of us not wiling to put all of our eggs in one XMRV basket. And if XMRV works out, the work the CAA is doing now will be of great use in understanding what XMRV has been doing to CFS patients.

To be frank, I wish that there were three or four orgs like the CAA so that the various tasks (lobbying/fundraising, advocacy, patient, physician, public education, research, etc.) could all be given the attention they deserve (and no matter how much attention any one group is giving these topics, I hope we can all agree that the resources going into CFS right now are pathetically small).

The sarcastic attacks shut down communication and suck energy away from efforts that I value and I am always going to respond by asking the person doing the attacking (as opposed to engaging) to put up by creating something more effective.

If I was the CAA I'd feel inclined to create a sight like TakeOurJobs.com where the United farm workers have created a sign-up form where unemployed American citizens (especially those angry about immigration issues) can apply for jobs as farm laborers. After a month THREE people (out of all the presently unemployed) had signed up.

My guess is that people want the CAA to be more aggressive and inflammatory in the advocacy area and because they are not being more aggressive they are coming up with reasons why.....one of which is kowtowing to the government. I think the CAA believes they are working in the best way possible - for the patients. They are trying to achieve results...they want to achieve results - that is their focus and they do actually achieve results - not as many as we would wish but they do..
-----------------------------------------------
Cort, why do you frame the wish for vigorous, passionate, intelligently adversarial advocacy as something "aggressive and inflammatory." I notice you use the same language when discussing Judy Mikovits. Is there something about this that makes you personally uncomfortable?

Good leadership, particularly with an illness like ours, requires the ability not to shrink from confronting cruel and demeaning treatment and representations. The CAA has never embraced the sickest among us, never acknowledged how marginal and powerless this population had been rendered by very powerful forces.

I don't want to get into the endless CAA discussion with you. Nelson Mandela said what he did when the ANC had triumphed, not when he was in prison. History is not something to be transcended but lived through creatively. Transcendence often means bypass and repression. The history is what it is. Many of us believe that the CAA has acted in ways that are not in our interest. These things have been outlined in very long and detailed threads. Without the WPI, the endgame was almost in sight for the dark forces. They had the NIH and CDC in their pockets, the DSM V was about to embrace the diagnosis of cfs as a functional somatic syndrome, and the ICD listing of m.e. was in great peril. And then a miracle occurred.

Advocacy is not some default setting. We are not simply stuck with the CAA because it's there. Good will and trust are built over time and I don't think the CAA and its leadership are people who inspire that kind of trust

Knowing one's history is not the same as being trapped by it. And as for the future, no one knows where this wild ride is going.

---------------------------------------

Its a community that is steeped in its history - that lives in its history - no knock there - there's not alot of positive stuff going on - but still that means there is not alot of attempt to transcend history and build a positive force for change. To some extent you have to do that...you have to give up your gripes and anger in order for something else to show up. Nelson Mandela did that with S. Africa; he declared this was a new day. We're still in the blame mode - we're not in the 'fixit' mode. We don't have a vision for the future we're working towards.

Click to expand...

[/QUOTE]

Cort, why do you frame the wish for vigorous, passionate, intelligently adversarial advocacy as something "aggressive and inflammatory." I notice you use the same language when discussing Judy Mikovits. Is there something about this that makes you personally uncomfortable?

Click to expand...

Well with regard to Dr. Mikovits her advocacy I do believe it is at times a bit inflammatory but I have long advocated more passionate advocacy from the CAA and I don't believe that aggressive advocacy is synonymous with inflammatory advocacy and probably shouldn't have used those words together. I would like to see the CAA be more aggressive in their advocacy - to let their hair down a bit more. I think it would work and I've said so numerous times.

The issue is not their size, but how they are using what is available to them.

The letter writing campaign makes sense. Their inability to acnkowledge this still floors me. They should have at least been on board to generate more media attention and get more people involved in their organization. They failed to capitalize on a critical moment in this research. Other organizations that have capitalized on it will be better off with patients donating.

For the record, nobody ever really addressed my issues with funding:

If a patient wants to give money that they know will be spent on XMRV and they (the CAA) have not funded any xmrv studies, and the pharm study wasn't actually funded by them... then if i donate my money to the CAA , my money is still technically not going directly into XMRV research... at best an portion of it is indirectly going to these studies... i can't find any evidence that they have directly sponsored or donated their money to XMRV specific, or Retroviral research...

(as an aside, the WPI specifically hired retro virologists because they the intention of looking for those types of pathogens)

They are losing donations to organizations providing more direct routes to the types of research people want to see now.

There was nothing inflammatory about the letter writitng campaign.

The CAA's defense at this point is becoming reactionary. They have made mistakes and keep trying to shift the blame around.

Additionally, relying on accomplishments that the CAA has made years ago really doesn't change how they are continuing to deal with this now.

Click to expand...

There's nothing matter, I think, with giving money to the WPI now. I think that's entirely appropriate. XMRV is the big discovery and it has the potential to do more for CFS than any other discovery - give away!

"that doesn't change how they are dealing with this now? You mean the XMRV study with Glaxo Smith Kline? The one that's focusing on immune deficient acute onset patients? That study? Why should they do more than that? That in itself should tell what we want to know about XMRV. I would stop there if I was them. There have been lots of retroviruses that failed...first you replicate the research and then if that happens go on fund some more. You may not be happy with some of the CAA's public utterances on XMRV but they do have an XMRV study going on....that's kind of where the petal meets the metal for me.

Just to inject some humor into the thread, I too am dumbfounded... but more likely due to the fact that I just rubbed alpha lipoic acid and carnitine all over my face.

Click to expand...

Err.....why?

Judders, what say we delete our extended miscommunication in this thread starting with my post that you felt was directed at you? It doesn't forward the thread much and CBS said everything I wanted to say only much better.

I don't think we can saw anything conclusively about the Alter paper until we see it. Both papers - CDC and the Alter paper were held back - it may very well be that the Alter paper will get published and it will still have positive results. That would be nice on so many levels!

A) We wouldn't have to think everyone is necessarily against us - and that some officials are really interested in the truth and

B) XMRV would be validated.....

That could very well happen. He's apparently an excellent scientist with a resume as long as his arm. Who's not to say that the extra work won't

Judders, what say we delete our extended miscommunication in this thread starting with my post that you felt was directed at you? It doesn't forward the thread much and CBS said everything I wanted to say only much better.

Click to expand...

Well... i'm pretty sure i have a precancerous lesion on my lip... and i read all this stuff about ala and alc on wound healing and cancer... and i saw some people using topical applications.... so the last few days i've started slathering it on my face for like 3o min lotion right before i shower

its probably a horrible idea, and ill probably grow a third eye. but it actually looks like the lesion has closed up and is about half the size it was beforee.... also my complexion is much better, and it doesn't cause any pain....
lol probably a bad idea, but who cares... i think it looks good ;p

My wife recently had an aggressive melanoma removed from her nose (light skinned Irish who doesn't know she isn't supposed to spent so much time in the sun). It made for an unnerving couple of weeks.

I hope you can get this checked out.

With everything else we all deal with, I know it can be hard to deal with one more thing.

Please take good care.

Click to expand...

yeah, my family gets those a lot, i'm on the lookout for it... my grandfather and uncle both got skin cancer, and my sister has had some suspicious things removed... i'm gonna have to get it looked at, but in the meantime i can't help but poke at it....

yeah, my family gets those a lot, i'm on the lookout for it... my grandfather and uncle both got skin cancer, and my sister has had some suspicious things removed... i'm gonna have to get it looked at, but in the meantime i can't help but poke at it....

Click to expand...

I understand the urge but I want you to know how anxious that makes me.:worried: